PCOS diagnosis

[Lindy2]

My 14 year old has just been diagnosed with PCOS. ☹️ It's been confirmed by a blood test.

We're seeing a doctor next week who specialises in women's health but is there any advice anyone on here can give?

As well as a multitude of other symptoms she's also suffering from nausea, stomach ache and headaches. I feel quite sad for her. She seems so young to be having to deal with this.

Hi I have a 22 year old diagnosed via ultrasound at doctors. Wasn’t getting much help
via gp and went private to see an endocrinologist.

DD had been prescribed the pill by the gp but wasn’t getting on with it.

Endocrinologist put her on slow release Metformin to combat the insulin resistance. Dd had to have the slow release, the regular Metformin gave her an upset stomach.

That wasn’t quite cutting it and DD was advised to also take Choline and Inositol it’s a supplement from Holland & Barrett. That made the difference along with slow release Metformin. Her weight reduced. With reduced weight her periods regulated.

DD also takes a high vitamin D , iron and B12

she a

I know it feels sad for her to have to deal with it at a young age but as someone who suffered with it undiagnosed/masked well into adulthood, I wish I had been wise enough to advocate for myself and get diagnosed when I was 14 and save myself all the years of suffering. Do not let them mask the symptoms with the pill or mini pill. You need to treat the root cause, sometimes that’s insulin resistance so the treatment is metformin which changed my life, but push for anything that isn’t “let’s just switch your cycles off”

Thank you @BeMintFatball. I've read some positive things about Inositol online. I'll definitely ask the doctor about it. I'll Google Choline.

She already takes a multivitamin but her vitamin d is still a bit low so I'll get her a higher dose of that.

Thank you @jackiesgirl. I'll do that.

Insulin resistance signs were one of the things that alerted me to it likely being PCOS. I'll ask about metformin. I'm hoping if the Insulin issues are sorted the headaches and nausea might also be resolved.

Some years ago, but at that time I would recommend Verity - they used to have a well frequented forum but now use Facebook.

Some used drugs like met but there was a lot of focus on low carb diets. The body only releases insulin in response to eating carbs. Refined carbs are the worst. So called healthy foods are often refined and low fat increase sugar (carbs). You can continue to eat carbs and take drugs or you can control insulin release through diet and so it’s unwanted effects. Game changer for me. Restored menstrual cycles and fertility within months. Stopped me becoming T2 diabetic. With no drugs or side effects.

Low carb becomes a way of life - I’ve been doing it nearly 40 years now. I rarely eat bread, pasta, rice, potatoes but lots of protein and green vegetables. I also dirty fast (I need milky tea) and only have one meal a day. Works for me.

If you take met you have to accept you will take it for life. You don’t take a 6 week course. 14 is very young to start taking medication for life before exploring dietary changes that may make medication unnecessary.

Please explore the relationship between food and the release of insulin before considering drugs to minimise the effects of insulin.

Agree diet has a big part to play but for me it’s striking a balance with how much you let it rule your life. It’s easy to fall into exchanging the symptoms ruling your life to your diet doing it instead.
Especially considering OP’s daughter’s age - there’s enough pressure and focus on diet culture at that age without adding to it. If the medication isn’t having significant side effects I’d say it’s kinder for her to live her life at this point than start worrying about what she’s eating.

I disagree. This is not a faddy diet. This is a diet specifically aimed at insulin control.

You can let medication control your life or you can take control of what you eat. In the first instance you are passive and a long term patient who may need further intervention. In the second, you change what you eat, because you understand how it impacts you rather than other people, and avoid medicalisation and further interventions.

Would you also say that a T2 diabetic should take medication and keep what may be an unhealthy diet in terms of insulin release?

@Lindy2 I have PCOS and things have changed considerably since I was diagnosed. Sadly I’m now type 2 diabetic but the resources available now are helpful.

It may be too early, particularly for your DC, but ask your GP about courses for type 2 diabetics. I went on an excellent course run by XPERT https://www.xperthealth.org.uk. It taught me how your body processes food and how to look at foods differently. For example the traffic light system is not that helpful for those with insulin resistance. The small changes to food shopping and eating are helpful e.g. full fat proper Greek yoghurt is far better than low fat yoghurts with loads of sugar. It’s not about not eating things you love, nor a faddy diet but building a long term way of eating which still includes carbs, chocolate, cakes etc but in moderation. I really wish I had this information 20+ years ago but the knowledge just wasn’t there.

Excess facial/body hair is a potential symptom of PCOS, being prepared and helping your DD to manage this is one way you can be supportive. There is a lot of help with this and treatments again are so much more advanced.

I'd be a bit careful applying general advice for adults to a 14 year old, especially about diet. I hope the gynae can advise.

I'm actually surprised she's been diagnosed at this age as I always understood that normal adolescent ovaries are more likely to be polycystic. But it's a long time since I was diagnosed so that advice has presumably changed.

What made all the difference for me was physical activity and strenuous sport.

Re-read my post, sorry if I wasn’t clear that I was suggesting @Lindy2 asked about the course for her, not her DD. As the parents will be doing the cooking, shopping etc at this stage they would benefit.